Tag Archives: primary lymphedema

Guest Post: Jim’s Tips for Exercise

Jim Miller has had lymphedema for over forty years, but doesn’t let that get in the way of leading an active lifestyle! He’s biked the coast of Oregon, participated in Bike MS, and now he’s here to share some tips on staying active with lymphedema.

First, I’m not a doctor; don’t play one on TV; and urge you to go see your own physician before undertaking any strenuous physical activity. There – the “fine print” is out-of-the-way up front.

Alexa asked me to put together a few tips for those of us (like Rosie who posts to “The Lymphie Life”)  who insist on putting our lymphedema through some strenuous sporting events. Rosie just did a triathlon after deciding she wasn’t going to let her lymphedema stop her from getting out and enjoying life even more. A triathlon probably takes several hours to complete, depending on its length, and my 65-70 mile bike rides to raise money to fight MS often take 6 or 7 hours. You’re going to build up some extra fluid, but not to worry: we have ways of taking care of that.

Here’s some things I’ve learned about exercise with lymphedema:

  • I have been told for years that regular exercise, staying fit, and maintaining a healthy weight are very important for managing your lymphedema. What I learned more recently is that regular exercise also helps keep your lymphedema from getting too fibrous, which makes it harder to reduce with compression wrapping.
  • Strenuous exercise generates more lymph fluid so anticipate some extra swelling, especially after long events.
  • Be sure you always wear your garment when exercising – whether light or more strenuous. Don’t even consider skipping it – the garment’s compression and its pumping action helps you get rid of the extra fluid.
  • Heat also affects our lymphedema as we all are aware, so heat plus exercise will create some conditions we’ll need to manage after our event is done.
  • If it is very hot, I liked the idea somebody posted on Alexa’s blog about wetting down your lymphedema limb. I did that after my first riding day this year and it was wonderful.
  • Drink plenty of fluids while exercising, especially for those longer events. Keep your body hydrated and your lymph fluid watered down. I know it helps.
  • Speaking of hydration, did you know Americans are as a rule 30% dehydrated? So when you go out and exercise you’re starting from a “negative” hydration status. I drink extra water for a day or two before a long, hot event like this month’s ride.
  • After the event, be sure to set aside time and do your manual lymph drainage. You have to help that fluid get out. I got a neck/back massage after our ride and learned my masseuse was a certified lymphedema therapist. Had there been more time and privacy she could have helped with my MLD massage. So if you don’t do your own MLD, look for someone to help you.
  • Oh, and one other little trick I learned last year while cycling the Oregon coast was to use what I call “spot wraps” to reduce swelling in specific areas. If my foot starts to swell after a few days of exercise (it did) I’ll take my Farrow Wrap foot piece, cut bits of white Comprex-Binde foam to fit over the ankle and across the top of the foot and snug down the velcro straps over night. Then I can be sure to fit into my cycling shoes in the morning. It worked like a charm this summer, too.
  • Even with MLD and a good compression garment, there seems to be a residual build-up of fluid that, for me, takes about three days to show up. So be prepared to see more swelling. This year I just bit the bullet and wrapped my leg for a couple of days during the week following the long bike ride. Hey, we do what we have to in order to live an active life with lymphedema.

The National Lymphedema Network has some excellent exercise tips here: http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

What tips and tricks do you have up your compression garment that help you manage your lymphedema under some special circumstances, like long or strenuous exercises?

Summer Tips & Promises

It’s June, lymphies! Can you believe it? This year is already halfway over; it’s amazing how quickly the months pass.

I wish I could be as excited about the summer as everyone else seems to be, but I’m already a little panicky. We’re right at the cusp of one of the most uncomfortable seasons for sufferers of lymphedema: the dreaded summertime, a season of increased swelling, awkward compression garments, and feeling self-conscious. Whoa, mama! That’s quite the trifecta.

Styling in my Mediven stocking.

I don’t mean to sound so negative; summer is a great season. I’m still learning, though, how to enjoy summertime without sacrificing my lymphedema care (something I do more often than I’d like to admit). I want my leg to be healthy.. but I also want to wear shorts and sundresses.. so where’s the balance?

I’m making a promise to myself and to all of you that I’ll be more consistent about taking care of my leg (and I hope you’ll do the same). This summer, I’m determined to wear my compression garment daily, fearlessly, without worrying about what other people may think or say about it. As for the short shorts and sundresses.. well, I’m making peace with the fact that it is what it is and instead of moping around, I’ve been slowly forming a new wardrobe of lymphie-friendly clothing that’s cool enough for the warm weather but will also help camouflage my compression garment. Maxi dresses, linen pants, wrap skirts.. they’re my new staples. I’ve even found some shoes that hide the stocking on top of my foot (peep-toe shoes are great for this!).

I’m trying to work with my lymphedema, instead of ignoring or obsessing over it – a happy, healthy medium! I’ll try to get some pictures of my clothes on here soon, but in the meantime, check out this post for tips on how to manage your lymphedema without compromising your summertime fun.

What are some things you do to beat the heat? How do you manage your lymphedema in the summer? Share your story in the comments section!

“The Lymphie Life” Comic

During the spring semester I took a sequential art class, where I practiced drawing things like comic strips, story boards, and graphic novels. I saw it as a great opportunity to do something Lymphie-related and soon came up with a short story about a teenage girl, Minnie, who has lymphedema in her leg. She’s incredibly self-conscious about it, and when she realizes that she has to sit next to her crush, Reese, in English class, she freaks out; if he notices her swollen leg, he’ll be so repulsed that he’ll never want anything to do with her again!

The comic itself is a little rough and there are some errant ink splotches.. perhaps someday I’ll work on a more cleaned-up version. Anyways, I hope you enjoy it!

Click on the first image to begin the carousel.

Self Care for Lymphedema Management – Get To Know Your Neck!

As a Certified Decongestive Therapist trained in manual lymphatic drainage, and a Registered Physiotherapist, I’m often asked by my lymphedema patients why I am so focused on the neck during my lymphatic massage treatments, even when the Lymphedema is presenting in an arm or leg.   The reason is simple:  there is a huge collection of cervical lymph nodes located in the neck region that can be capitalized upon to stimulate the lymphatic system to improve its overall flow.  The number of lymph nodes located in the neck region is approximately 300, far greater than in the armpit, groin, or abdomen, and may represent over half of the total number of lymph nodes in the body. This is not surprising given that it is at the neck where lymphatic fluid rejoins the cardiovascular system via the subclavian vein.

The neck represents a great target for improving overall lymphatic flow, not just because of the total number of lymph nodes present, but also because of the infrequency of functional limitations in the lymphatics at the neck.  Patients with Secondary Lymphedema which arises due to radiation to, or removal of, lymph nodes in the armpit region from their breast cancer treatment (for example), typically retain full functional capacity at the neck.  Similarly, in the case of Primary Lymphedema, the nodes at the neck typically retain sufficient functional capacity as well.

In manual lymphatic drainage massage, we always begin the massage series with several strokes specific to the neck region, to draw lymphatic fluid from other regions of the body, and send this fluid back into the cardiovascular system.  Such stimulation contributes considerably to the results we see with manual lymphatic drainage.  We encourage all of our Lymphedema patients, be they Primary or Secondary, to incorporate self-massage of the neck into their daily self-management strategies.  The entire series of neck strokes should only take about 5 minutes to perform, and is easy and comfortable to do.  A certified Lymphedema therapist would be able to show you the appropriate technique. You can also learn more by visiting our website where we have posted a short video demonstrating lymphatic drainage self-massage at the neck.  Best of luck!

Lindsay Davey, PT, MScPT, MSc, CAFCI, CDT
Toronto Physiotherapy

LympheDIVAS new patterns are in!

LympheDIVAS have just released their Spring Patterns, and they are gorgeous, gorgeous, gorgeous. What’s even better is that you can get free shipping on any of these new patterns between now and May 8th – just enter the code MAY12FLOWERS at checkout.

Click on any of the images to be taken to the product page:

What I want to know is when will LympheDIVAS begin making stockings? I’d love to get in on these patterns!